Thanks to many of you who warned against the use of Haldol. Dad has been on it for approximately 2 weeks now as a prn before caregiving as he was agressive with nursing staff. Initially seemed to be ok on it but last Saturday, Wed. and Thurs. he has been very sleepy.Yesterday we thought the sleepyness was because he had a shower both mornings but now not so sure.Could this be caused by the Haldol?Dad did not do well on Seroquel. Made him sleep for 3 days.Any suggestions for alternatives?

Dad is being transfered to a Long Term Care Facility Interum Bed tomorrow morning so will have a new physician caring for him.

Any suggestions would be welcomed.

Thu May 24, 2012 5:02 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Alternatives to Haldol

The primary danger with Haldol is NMS: Neuroleptic Malignant Syndrome. My husband got it from taking Risperdal. It wasn't noticeable until they increased the dose. He became very stiff, could not swallow, ran a fever and could barely move at all. Fortunately, he recovered to baseline after discontinuing it.

Patients are often started on too-high doses of neuroleptics. My husband tolerates Seroquel very well after starting with a very low dose [his neuro at the time started him on too high a dose, initially].

Oversleeping seems to come and go in Lewy and is not always medication related.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Thu May 24, 2012 5:58 pm

Pat

Joined: Sun Jun 24, 2007 5:35 pmPosts: 349

Re: Alternatives to Haldol

GRollins, here is an excerpt from the foreword of my book. The author of this foreword is Dr. Daniel Kaufer, an LBD specialist who serves on the LBDA Scientific Advisory Council and is Director of the UNC Memory Disorders Program in Chapel Hill. This might give you some other options to pursue with your Dad's doctor.

"...In general, individuals with Lewy Body Dementia are exquisitely sensitive to certain types of medications, particularly those that block the brain chemical acetylcholine. Diphenhydramine (Benadryl) is widely used as an over-the-counter sleep aid or cold/allergy remedy and is very strongly anticholinergic, which can provoke confusion and hallucinations. By contrast, medications that are commonly used to treat cognitive symptoms in Alzheimer’s disease, such as rivastigmine (Exelon), galantamine (Razadyne), or donepezil (Aricept) may also be useful in treating Lewy Body Dementia. Neuroleptic or “typical” antipsychotic agents used to treat agitated or psychotic behaviors in schizophrenia (e.g., haloperidol) are sometimes used to treat similar symptoms in Alzheimer’s disease, where evidence suggests they may slightly increase the risk of stroke or death. This is also true in Lewy Body Dementia, but additional caution is needed due to the risk of provoking a “neuroleptic sensitivity” reaction, which entails marked alterations in cognitive and motor functioning that often requires hospitalization. At present, it is generally believed that quetiapine (Seroquel) is the safest medication to use in treating marked agitated or psychotic behavior in Lewy Body Dementia patients. Other “atypical” antipsychotic agents such as risperidone (Risperdal) or olanzapine (Zyprexa) are more likely to provoke a sensitivity reaction than quetiapine, but are generally less risky than haloperidol. More research is needed to identify safe and better therapies..."

Haldol can cause sleepiness. LBD can cause daytime sleepiness. I have no idea how you'd tell what the cause of one's sleepiness is.

Did your dad take a small dose of Seroquel (half a 25mg dose, for example)? If so, then the general alternative to Seroquel is Clozaril. If people don't do well on Seroquel or Clozaril, sometimes Risperdal is tried. ALL OF THESE MEDICATIONS (including Haldol) have dangerous side effects, and can cause irreversible problems or death in one dose! So, it's always best to avoid them. But, if they can't be avoided, proceed cautiously.

For good drug side effect info, see drugs.com or rxlist.com.

For good LBD drug info, see Dr. Brad Boeve's "Continuum" paper on lbda.org (do a search).

Sat May 26, 2012 4:21 pm

GRollins

Joined: Sun May 13, 2012 4:31 pmPosts: 11

Re: Alternatives to Haldol

Dad was moved to a long term care facility on Friday and so far so good.Thanks for the information regarding Haldol alternatives. Will meet with his new doctor on Thurs and see what he thinks.

Sun May 27, 2012 8:25 pm

GRollins

Joined: Sun May 13, 2012 4:31 pmPosts: 11

Re: Alternatives to Haldol

My mom and sister met the doctor this morning. He agrees Haldol is not the answer for dad. He will wait until he has had a chance to get used to his new surroundings and then wean dad off the Haldol. He wants to give him as little medication as possible but still keep him comfortable.It appears my dad has had another mini stroke and it has affected his right hand. The doctor feels the Lewy Body Dementia will progress quickly. We have seen how fast it has progressed over the last 3 months and that is just a sign of things to come. While on one hand we don't want my dad to suffer but on the other hand it was very difficult to hear that the doctor felt the end of the summer would be a long time for my dad.The goal is to keep dad comfortable. We as a family will continue to visit regularly and try to make his remaining time as happy as possible. This is all so difficult to watch but we should be happy that he has lived so long relatively symptom free and was able to manage quite nicely in his home environment until he broke his hip in December. Dad is 82 years old and has lived a full life.We will meet in 6 weeks with the whole team at the nursing home and will go from there.

Thu May 31, 2012 12:45 pm

Julianne

Joined: Sun Aug 29, 2010 5:46 pmPosts: 610

Re: Alternatives to Haldol

GRollins,

So sorry to hear about your dad's decline. What sort of doctor is he seeing now (i.e., a neurologist or something else)?

GRollins,Thanks for the update. I'm sorry to know that your dad may be nearing the end.Robin

Thu May 31, 2012 3:10 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Alternatives to Haldol

Hard as it is to see a LO going through the end of life, knowing that they will be released from such a horrid and debilitating disease does give some amount of comfort. Now that it's been about a year and a half since my own dad died, I try to focus on who he was before this awful disease took over his life and the lives of all who loved him. His last year was so bad that I can barely think about my frequent visits with him because, quite frankly, there was so little positive that was going on it is heart breaking to remember him in that awful state. I only wish he had not had to suffer the length of time that he did. Hang in there, it's tough, but you will make it through with the support of family and friends and the knowledge that this awful state will be over. Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Dad has been in the Long term Care facility near my mom's house for 3 weeks now. He seems to be settling in nicely and they have stopped giving him Trazadone at night to sleep. He is still getting a small dose of Haldol morning and night but as he continues to settle in the Doctor wants to wean him off it it.Dad seems more alert and there are more moments of lucidity. Last Saturday the family joined us at the Nursing home to celebrate my son's 16th birthday. Dad was laughing and smiling during the party. This morning my sister, her daugher and I joined Mom and Dad there for a Father's Day Strawberry Social.Things seem to be going well right now so we will enjoy the good moments when we can. We are all feeling better about what has happened since December.

GRollins,Glad to know you've had some good times with your dad recently. I'm sure you'll cherish those.Robin

Sun Jun 17, 2012 11:04 am

GRollins

Joined: Sun May 13, 2012 4:31 pmPosts: 11

Re: Alternatives to Haldol

Just wanted to post a quick update. My dad has been in a long term facility for a little while now. His doctor is wonderful. He has reduced dad's Haldol to a small dose at night and will reduce it further. He also would like to take him of the trazadone.Dad has settled so well (and so have we) to life in his new home.He is able to eat things he likes by himself and has appropriate responsed to some conversation. He tells us he is happy to see us when we come and says goodbye to each one of us by name when we leave.Not sure how long this will last but we continue to cherish these moments with him.

Sun Aug 12, 2012 9:00 pm

irene selak

Joined: Sat Jan 03, 2009 2:59 pmPosts: 1978

Re: Alternatives to Haldol

GRollins, Such a postive post, it was nice and I am glad things seem improved and we are never sure for how long so that's why it is important to make each day count !

You cannot post new topics in this forumYou cannot reply to topics in this forumYou cannot edit your posts in this forumYou cannot delete your posts in this forumYou cannot post attachments in this forum